"12 Days Later" or "Medical Hostages": You pick this entry's title

June 30, 2008

"12 Days Later" or "Medical Hostages": You pick this entry's title

I suppose that if I were to choose the title of "12 Days Later", it gives off less of an impending pity party, which could quite possibly follow any way. However, if I were to choose "Medical Hostages", you, the reader, could certainly expect a rather wordy-written pity party. So, being that I'm be getting to right now at 12:54 a.m. Monday morning, let's go ahead and "I'll choose "Medical Hostages for $100, Alex..."

If you're currently bored, reading this will not likely to change your mood; just so you know. Bring on the "Blah, blah, blah..."
Okay, what is a Medical Hostage? Until these past several weeks, I never even thought of the term, but I suppose I would explain the term to be used in any scenario where a person is suffering from some sort of medical malady that prohibits that person from pursuing or experiencing their routine or normal lifestyle, as it was prior to the medical issue, taking precedence. Anyone who reads this blog knows of all the things that are going on with me, at least within two weeks of "said" activity that's going on with me... so with that I'll bring you up to speed, though it's not far from the norm:

Over the past 12 days. I have experienced attacks, nearly daily, and sometimes two attacks in a single day, let alone night attacks, which I am not directly aware of, in that, I tend to sleep through them, to an extent, but the muscle spasms are enough to wake up CC out of the cold sleep. It is commonplace is to wake up in the morning with my pillow stuck to my head, bottom sheet and top sheet stuck to me as well, due to sweat; a complete body print is visible on the bed when I get up. The day before yesterday (Saturday), turned out to be a very productive day for the most part. As a family, we all got different tasks accomplished in the house and outside the house and we ventured out to have a family date watching the movie, "WALL-E" (very good, refreshing), during which I remained in my motorized chair, and only consumed snacks and food that we specifically made and brought from home. We then drove to Rockland and dropped Missy off at a friend of hers for an overnight stay, and then on our way home, CC, Joshua and I stopped by a restaurant that we have not been to together as a family, called Ruby Tuesday's. The food was excellent, and the waiter was very attentive to my particular needs, including a manager following up with us at the end of our meal; we were very, very impressed.
It was looking like we had completely succeeded in a venture out of the house without me succumbing to an attack triggered by either exhaustion, heat and/or food... before we could make it home though, the oxygen tank that was thought to be securely situated directly behind me, turned out not to be securely situated, and it fell making a very loud bang directly behind me; for the second time in recent memory, and attack was triggered within me, because of my being very startled. My arms and legs immediately froze in the positions that they were in; I was unable to move my fingers, my toes, ankles, knees and wrists. Breathing became difficult; short breaths and gasps were all that I was able to manage while the spasms begin to take control. CC explained to me that we got home and into the driveway, and that Joshua was unable to get the normal wheelchair under me, as she lifted me out of the van and tried to put me into the chair. So I ended up falling against the chair and then onto the ground, onto my back. It was not Joshua's fault; the legs of the wheelchair turned out to be extended too far so that he was unable to get the chair far enough forward for me to sit into it. God brought a good Samaritan to us, in the form of one of our neighbors across the street; she approached and asked CC if she needed help. CC said yes.
The Samaritan noted that I was not "skinny", shall we say, so she suggested that she would go and bring a couple of men from another neighbor to come and help. According to CC, the four of them were able to lift me up and get me put into the chair and then CC and the original good Samaritan helped get me into the house and onto the couch, much to Annie's panic that an intruder had walked into her home and I was incapacitated (Annie has become very in-tune to me and my medical condition; it is not unusual for her to be the first one aware that I am not well. She will begin barking in a panicked sort of way and then running to where family members are in the running back to me, back to family members, back to me, until somebody comes and follows her to where I am. While I am lying on the couch, if my arm and hand are not covered by a blanket, she will put yourself in a position where she can very softly, slowly and very gently lick my hand and my fingers and arm. It seems to be her way of caring for me and treating me the best she knows how). Anyway, I think I spent the next six hours or so, on the couch in what was a very long and painful attack.
This morning was productive as well as yesterday was, but today's attack hit around 3ish as I was sitting down to a snack and some brief TV...3 to 4 hours later, the attack was ebbing but we needed to pick up Missy and her friend, so I managed my way into the van and remember very little from the errand out; I couldn't be left alone at home while the errand took place. I have no recollection of any dinner...? The meds I take make certain that my short term memory gets "formatted" (like a hard drive) several times per day. CC goes nuts daily with all of my repeated questions...Praise God she loves me, and I mean that most sincerely

The Hostage Aspect:
I'll strive to make this shorter than my last diatribe. To my memory, this disease has held me hostage from my working for a living, from my privilege of driving, from my being able to ride bikes with my family, and specifically with my children, from walking without a cane, and not having to have oxygen on during the day times and during the night times, preventing me from chaperoning Missy's school dances, preventing me from being able to drive my children to and from school, from attending my nephew's graduation from high school, from attending my nieces graduation from high school, from attending one of my very good friend's wedding in San Francisco, from being at MPPC for Doug's final Sunday service, from finishing Vern's choir recordings, from being realistically considered to take my family and join the rest of my extended family up in Oregon this year, from being able to take a plane flight that is over a couple hours, from being able to romance my wife with the freedom we once knew, from eating nearly every single favorite food I have ever known, from just being alone, by myself for an extended period of time...to name a few...
this disease does not just told me hostage but it holds my whole family hostage. It creates an awkwardness in weirdness between me and my friends, because so many don't really know what to do with what I am going through, and I'm sure that somewhere inside, they have the previously un-thought question of "what do I do if he all of a sudden goes into an attack. And I am the only one there with him?" I try to put myself in their shoes, but that just makes me feel more awkward and uncomfortable.

Well, it is time to end this entry; I have "partied" enough for one morning, no? I just couldn't try and go to sleep one more night while thinking the thoughts I have noted above, knowing that I had not let them go yet. Now I have; they are out of my head and into my blog.

More history awaits tomorrow to become the present and then invaluable memories.

The accounting of the past week and a half, or so...

Wednesday, June 18, 2008

Greetings all, It's been several days since I have posted; it seems that I find myself apologizing for not keeping this as current as I would like. The challenge is that the attacks have been more frequent, which means the recoveries have been ongoing and I find I spend much more time in bed or on the couch than I do sitting upright in looking forward to writing things on the blog.

It was recently suggested to me that this blog will prove instrumental, If not critical, to my future care as soon as I am able to find a physician familiar with this disease and active in caring for it, being that this blog is kind of my case history, autobiographically. That being said, I was encouraged to be as detailed as possible regarding the attacks, the recoveries, etc., so that the doctors will have the most information available to them for their use and study.

Okay, having said all of that, I unfortunately cannot be terribly clear over the past 10 plus days since my last blog entry. But as I recall, the last entry included information regarding five attacks out of seven days and then the following week there were four attacks in seven days, but those four attacks were particularly vicious and each one was a degree worse than the one preceding it, culminating with an attack on a Thursday, which hit me during the daytime and the attack lasted hours instead of minutes. Once again, that attack included paralysis and an increased difficulty in breathing and sharp chest pain. When it gets to the point that I can't breathe, I begin to panic, regardless of what my brain tells me that I will be okay and that people are there to help me. The lack of the ability to breathe comfortably creates a panic within me that I just have to ride out.

I am seriously blessed that CC is generally always here during these attacks, and she helps me to breathe by talking to me and encouraging me. Most of the time I can remember some things from or during an attack, but it is normal for me to not remember the whole attack because the brain fog that accompanies the attack can be pretty thick.

We are praising God, that we have been given oxygen to use here at the house, because it has made an instrumental difference in my recovery from the attacks as well as keeping my head clearer than not, during the day. I guess the harder part of having the oxygen is that the nurses have suggested that I remain on the oxygen as often during the day as possible. My right lung is not as strong as my left; I'm not sure specifically why that is the case, but, as I understand this disease more and more, some of the answers lie within the understanding of the disease itself and how it progressively battles the body on a minute by minute basis. Bottom line for me, is that I have decreased use of my right lung which makes it difficult to breathe deeply, properly and effectively, especially when it comes to getting through the attacks. The use of oxygen is pretty important in my case, and I'm taking that very seriously.

To take a break from accounting for my days, I must share that my life, right now, is surreal. In so many ways, my life was somewhat surreal when I had my job at Menlo Park Pres. as well as having my job at Fair Oaks Pres, in that, God blessed me with two awesome jobs, working with incredible people and being in a position to make significant, if not life-changing church improvements, regarding their technical capacity and products. From 1998 until sometime in 2006, I was blessed with the opportunity to work with interesting, caring, brilliant, loyal and loving coworkers and fellow employees. Even just one of those attributes can be difficult to find in today's working world, yet I was blessed with all of them during my tenure as a Chief Audio Engineer and Director of Media Technologies. I am reminded of the challenges that all of that brought, along with all the rewards; always a matter of checks and balances in one way or another, and to me, that in itself was pretty surreal. Flash forward to now, from 2006 through till today, Wednesday, June 18 of 2008, this disease (HypoKPP), in coordination with other medically contributing factors, such as hyperaldosteronism, type II diabetes, Hyperphosphatemia and the un-known issues with my liver, find me living a surreal life, though 180° from the life that I lived the previous 8 to 10 years or so. With that change comes the inevitable exchange or loss of contact with former colleagues and friends, to some extent. Only occasionally do I find myself hosting or posting a pity party of such a nature, because God has blessed me with the most supportive and incredible family a man could ever, ever even hope for.

I am blessed, regardless.

So, where was I before I digressed as noted above? I guess I was thinking of the differences between life before the diagnosis (and the multiple attacks preceding that diagnosis), and life as I know it now, which includes nearly daily attacks of paralysis as well as muscle spasms, short term memory loss, etc..

So today is Wednesday, which means that this past Monday preceding, was an unpleasant lengthy attack; painful paralysis as well as spasms. To get to the bathroom and back on Monday night included the unquestionable use of the Walker. Tuesday brought an opportunity to go to physical therapy and have Mark McCoy work on my muscles and help me stretch. My aunt brought me there and I used the Walker to get in and get out. Moving very slowly as to cause the least amount of pain, and not trigger any other issues (it's like walking on eggshells in some ways, keeping a constant fear in front of me that if I stepped wrong or move too quickly, the façade of being independent and mobile could come crashing down at any point.) I stayed on the oxygen for the visit, which was very helpful in keeping my head clearer and helping me to breath. I slept when I got home from the appointment for approximately 4 or 5 hours, sleeping with minimal pain on the couch. CC woke me up to let me know it was time to go to bed, but Missy wanted to watch one of the movies that they had rented so I watched the movie with her as kind of a daddy / daughter date time while CC went up to bed and Joshua joined her so that he could have some time with mom.

I woke up this morning feeling far better than I did yesterday and I am able to walk with only the cane instead of the Walker. I have no doubt in my mind that I am walking this well, and feeling as well as I am, thanks to the work that Mark did yesterday. I am scheduled to go back to Mark tomorrow (Thursday) and CC is planning on taking me there, though, we will have all of "our" kids with us, which means we will have Jessica and Jayden along with Missy and Joshua, so I am trying to figure out how to be creative and occupy the kids time, so that CC can also have some deep tissue massage done by Mark as well.

We will just have to see how things turn out.

I'm going to include in this entry, an e-mail that I sent out to the list of periodic paralysis people who I can connect with on a weekly basis, sometimes. It is an e-mail list made available through the Periodic Paralysis website and the list includes people from all over the country as well as some folks in Australia and England; all over the world, I suppose. This e-mail list has been most valuable to me in my learning and understanding of this disease, so when I learned some information that I thought was sure would be beneficial to others on the list, I put an email together and sent it off to everyone. Shortly after its posting, I received several e-mails of appreciation; each explaining how the information in the e-mail helped to tie up loose ends for them, which was exactly what happened to me as I learned the information. So without further ado, here is that e-mail:

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Greetings all-

The last number of weeks has been challenging ones for us. Last week alone, I had attacks five out of seven nights, though none of them landed me in the ER out of our choice to just treat it at home.

Since my last contribution/inquiry of the listers, my doctor approved home health care for me, for a period of time. It started out with nurses coming three times a week to where we are now, which is once a week; they come to the house and draw labs, they assess my condition, and they direct us in our immediate care of my needs.

It is because of one of these nurses that I wanted to write you all and share with you some of the things that I have learned. So here is what I have learned:

1. Nausea/Mucous: I have been experiencing nausea on a daily basis now for roughly a month and a half and we have tried to treat it with different medicines that help with upset stomachs, including Phenegran, but I have learned that the nausea only goes away for a brief period of time and then returns. The nurse explained that when the body has a potassium dump or Spike, it creates mucus in the stomach lining and the intestines to protect the walls; it goes into auto-defense mode, trying to guard itself against issues that would happen due to the potassium change. The production of the mucous upsets the stomach and can cause cramping as well.

2. Chest congestion: as we deal with this disease, our lungs take a fair hit from our lack of exercise as well as the build up of the mucous in the system, creating chest congestion as well as increasing our susceptibility to bronchitis and pneumonia.

3. Intestine sluggish/long periods in the bathroom: it takes muscles to push the food through all of the intestines as well as to avoid it out of the body and it is not uncommon to have the muscles around the intestines not behave as they are supposed to, creating blockages, constipation, etc. this is been a challenge for me, leaving me in the bathroom alone to try to figure out what the issue is causing this to take so long. I'm sorry if I'm giving you more information than you want, but, I was hoping that some of this may help to validate some of the things that people on the list are feeling or experiencing, like me.

4. Cold sweats: the cold sweats, we have always thought was directly related to what food I was eating, how much salt intake. It had, sugar intake, etc. the nurse explained that the cold sweats are in immediate indication that your body has just dumped some potassium and your body is reacting to that potassium dump. It is also par for the course to have that when you ingest liquid potassium or if you take several of the supplements at one time, you can experience the same thing, but it would be a period of time after those supplements have gone into the system. I deal with these every single day, probably like some of you do.

5. ER: One of her last pieces of advice was that when I start to experience brain fog and cold sweats and/or weakness in combination with those, to call 911 and get into an ER and establish another ER pattern to raise awareness within that system that I need better care than I am receiving. She suggested withholding the doses of potassium until in the hospital so that the labs can be accurate, instead of taking labs after I have already had an increase in potassium from home. My wife and I are still talking about this last one, because that impact of going in is not just on my wife and me but also on our children and her work.

Oh, I did also want to share that I was given software called Naturally Speaking by Dragon software, and this software allows me to use a headset mic and speak my e-mails in my blog entries into the computer and not have to type. Nearly every command in using the computer once it has booted up can be done via voice. And this software has been a huge blessing to me. Especially on days like today, where my arms and muscles feel beaten and sore from the previous night's attack. I would strongly suggest it to anyone on the list. If you read my e-mail and some of the words are out of place or odd in that sense, it's because the software wrote a different word that sounded like the word I wanted and I didn't catch what I proofread it. :-)

To close this out, I just wanted to share these different things that I have learned with you, realizing that we all don't experience the exact same things, but that I am feeling confident that the majority of the information I have received is good and helpful and validating.

With that, welcome to new members; I hope this list blesses you as it has me and greetings to each of you.

peace and blessings-

w

wade odum - HypoK - Sacramento, CA

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There was something else that I have learned that I did not include in that e-mail to everybody, unfortunately, and that is that it is normal for the attacks to be progressive; smaller attacks leading up to a larger, more vicious attacks which likely would need to be treated at the hospital, if at all possible. The problem, of course, is, that you don't know where you are in the attack process itself, i.e. You don't know if you are at the beginning and you have several more attacks to go or you are towards the end and the next attack that you suffer may be the one that you must go into the ER for in order to be safely delivered from it. It was suggested to me that continuing to treat these attacks at home is, in fact, very similar to playing Russian roulette. After hearing that, I talked very seriously with CC about going ahead and being seen in the ER more often than not as opposed to just treating it home and waiting for it to end. I cannot bear the thought, even the imagination, that something could happen to me while I am at home and, though we were doing our best to take care of it and treated at home, something bad happens and we are left/they are left with a pretty horrific memory. At least if I am in the hospital, the hospital is responsible for my care and my survival, not my wife and kids.

That's just part of my daily thought process, unfortunately.

A reality for us in considering doing the ER when attacks hit, is that we have two children with us that would have to go with us to the ER, unless we can find family (at the drop of a hat) to stay here at the house while CC and I go in. Another consideration is possibly having my aunt and uncle meet me at the ER and speak for me and watch over my care there while CC stays with the kids until something else could be arranged. All of this is pretty overwhelming, fairly scary and requiring a plan of some kind that has to be flexible and easy to implement in a moment’s notice. Having just said all of that, I am now motivated to go ahead and write up a tentative plan of sorts, that we can mold and shape and figure out how to implement as needed, so that the kids are covered in taking care of them and easing their fears while my care is addressed in a facility designed to address it medically. Your prayers are coveted as we try to figure out the right way to handle all of this; …is there a right way?

So, what has happened so far this week?

Thursday, June 5, 2008

Well I'm not sure where to begin on this entry, but I will do my best to fill you in regarding what all has gone on since Sunday night to today. That's not a very ominous beginning sentence for a blog entry, is it?

I believe it was this past Sunday, that we celebrated Joshua's birthday along with my cousin Chris's birthday, here at our house. My aunt and uncle and cousin all came over Sunday afternoon, and we all ate well and enjoyed one another's company, and the time was very well spent.

There came a point in the early evening where I began to feel quite poorly and tried to get up the stairs by myself. Missy saw me and called for her mom and they helped get me up the stairs and into bed. Once at the bed, the attack hit more effectively and I was unable to move, except for my head and neck. Jaw was locked, etc. Paralysis remained into the night and subsided around 3 AM.

Monday night brought another attack; I think it was just Josh and me in the house when it was clear that I was not only feeling poorly, but I all of a sudden began to become fearful and scared, very similar feelings to what I had felt when I was still working at FOPC, and I was in The Family Life Center, while I was working on the church's new microphone rolling chest. The attack that I suffered in the FLC over two years ago is chronicled at the beginning of my blog, but this attack was not the same as that, because in this attack, I did not lose consciousness as I did in the FLC, however the perception of fear was very similar. I put myself on oxygen and sat on the couch until CC returned. Once back, she realized that the oxygen tank that I was using needed to be changed and so she began to change the tanks. In the process of changing tanks, one of the tanks, the new tank that is, did not seal properly, (which I'm sure is not an uncommon case, using tanks that are used over and over and over again) and when she turned the tank on to check its pressure and begin its use, it made a very loud “GASP” sound when she turned it on and that sound, being loud, startled me, triggering an attack and literally freezing me at that moment. I was unable to move anything. Everything had frozen; my jaw, my hands, my arms, my fingers, my eye lids, etc. I was able t swallow, but not without great concentration and effort.

CC managed to get medicine into me and wanted to keep me on oxygen while going up the stairs to our bedroom which presented a slight 250 lb problem (me). She called Missy downstairs and Missy helped get me up the stairs. After having managed to get me up the stairs and into the hallway, they were able to both carry me and get me onto the bed. By this time, I was no longer frozen, but I could not move my arms, my legs, or my feet; they simply did not respond to my commands to move. I remained that way until the early hours of the morning, but then it hurt too much to move. On Monday, I spent pretty much all day in bed, the only real movement I was able to muster was with the walker to the bathroom and back, and that was a very slow travel.

Come Tuesday morning, it was very much the same as was Monday morning; hardly able to stand and hold my own weight and requiring the use of the walker to go from the bed to the bathroom and back. Debbie, the Home Health Care Nurse, came out Tuesday morning and took a full set of lab's from me and also confirmed that these attacks are all in-line with HKPP. She reiterated to us that I needed to be on oxygen, more often than not, especially following medicine intake, and that it is critical that I be on oxygen during and after an attack. Tuesday night brought another attack, completely depleting any energy and strength that I had gained from resting the previous days, while recovering.

Sunday night, Monday night, and Tuesday night's attacks were not as a result of food or anything of that sort. Sunday night, the attack was the same as Tuesday night’s attack; both due to a drop in potassium or simply low potassium. Monday night, the attack was triggered from me being very startled. My most recent labs have shown that my potassium has been running low, regardless of the number of supplements I have had. The nurse was concerned that I had become loaded on potassium due to all of the supplements and liquid potassium that I had ingested over the last few days, but all the labs came back showing my potassium to be lower than higher; by no means, was I loaded on potassium, in fact, my body was continually dumping the potassium out of my system. Each time there is an exchange of potassium in my system, I tend to suffer an attack as a result of that exchange. It is kind of just that simple.

Yesterday was Wednesday, and I'm thankful that I did not have an attack yesterday morning, afternoon and evening. By Wednesday evening, I was using the cane and just going very slowly instead of going with a walker.

I'm pretty sure that I did not mention that June 3 was CC's birthday! She and her mom share the same birthday; pretty unusual, huh? I managed to arrange to have some flowers delivered to her here at the house yesterday, but other than that, I was unable to go and get her gift to open on her birthday. I felt, and still do feel, like crap for not having gone out while I was feeling better, and purchasing her a gift. Most unfortunately, the kids did not remember or realize that it was her birthday, so neither of them wished her a happy birthday in the morning when she woke them up for school. To top it all of that off, I wasn't even able to take her out for dinner, due to feeling poorly and then suffering the attack. She took Joshua to his gymnastics class, which he has on Tuesday nights and Missy remained with me in the house, watching TV while sitting next to me on the bed. During and immediately after an attack, there really isn't very much that can be done for me outside of being in an emergency room. They just have to wait until the attack is completely done.

A number of weeks back CC and I had planned that I would go down to the Bay Area on Thursday (today), so that I could be in town for my niece's Friday morning graduation from high school. That plan stayed in place all the way until yesterday, when it was made really clear to me that I'm not in any real condition to travel, and that, should I make it down to the Bay Area in one peace without any problems, the graduation itself is going to be outdoors with no shade, approximately 2 hours long, and the weather prognosis indicated windy conditions. The handicapped seating is going to be middle-center of all the seating, which would be very awkward for me, should something go wrong.

This week has turned out to be vicious and very disappointing, at least so far. I do agree that it is not logical for me to try and make the graduation ceremony, and I do agree that just the traveling itself could cause problems at this point in the game, but my heart is there with my sister and her family, and especially with my niece Kirsten.

As it stands today, I believe that my parents are planning on coming up on Sunday afternoon and bringing with them, one or possibly two electronic chairs for me to test out and try out, so I hope that that will end the week in good stead, that is to say, 180° from how it began.

Last night, Missy attended her school's eighth grade graduation, which was held at Fair Oaks Presbyterian Church, where I used to work. My very good friend Rob ran sound for the event; Rob was my Chief Tech when I finished my tenure at FOPC, and he became the head of the department, fulfilling my responsibilities in my absence. Both Missy and CC attended the graduation itself, and both said that the sound was excellent, something that does not surprise me one bit. Rob is excellent at what he does and he is passionate to do the best job each time he steps into the booth. I wish that could be said of all techs in all churches, but unfortunately, it cannot. FOPC is very fortunate to have such a skilled and passionate craftsman as Rob. The same is true for First Pres Roseville having Craig Fetter at their technical helm; they could not ask for, or want for more. Both churches are impressively blessed to have these two superb technicians and I am equally blessed to call them my friends.

This sentence concludes this entry in the blog; we shall see, what this evening, and then tomorrow holds in store.

Missy's "This I Believe" Essay

Missy was tasked with writing an essay called "This I Believe" and she asked me if I would want to put it here on the blog so that others may know how she feels and what she believes.
It left me speechless and humbled and blessed, to say the least.
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My dad is a super hero

“Batman! Look Mama, it’s Batman!” a little girl screams. Ha. That little girl is me, in my mind. I love to watch cartoons of Super Friends, Superman and Batman. “Batman!” he was always my favorite out of every hero. I always thought that super heroes were the special ones. People who had super cool powers and amazing costumes. Then I thought of my dad, and how he could pass as a super hero for Halloween. He is a man, strong, brave, a good actor, and a perfectly awesome father.

Then it occurred to me. When my dad has bad days when he is sick and having attacks, he is brave, strong, and a fighter. Maybe he is a super hero, I keep thinking. He’s strong, like Superman, and protective like Hawk Woman. He helps me when I cry. He’s always what I need to make a day seem like a day that is the best ever. My dad is like an angel, always watching over me. “My dads a super hero!” it made sense that he could be one of them. He’s strong like Superman, caring like Wonder Woman, always thinking like Green Lantern, and never gives up just like Batman. How cool it is to have a super hero dad. And to me, he is the best hero that has ever lived.

He fights for freedom from the sickness that he has. He also fights to protect his family and friends. Isn’t that what super heroes do? Fight for the freedom of who they’re saving. And don’t they have people that they care for? Mothers, girlfriends, boyfriends, or fathers? My father also trusts the people around him. He trusts my mom and me to help him when he is going down. He calls on friends to help pray for him. Hopes from others can help almost as if they were there with him. Heroes need help to. Batman has a butler that helps him with information that he needs to find. On the show Super Friends, the heroes also need help, help from each other. Not one of them is ever alone. They always stay together, to help and support. They depend on each other.

Even though he’s physically ill, he is still as much a hero as I believe that he is. And even if he has to stay in bed for the day, I can still see him thinking of when he was playing tag with me and my brother, or practicing volleyball with me. And having that feeling of being able to be in the outside world. Not just being inside, but feeling the freedom in the world is an amazing thing to feel. And super heroes feel that almost every day. In the movies and TV shows, they fly around or are always on the move to help someone or go and meet or plan with someone.

And one of the most important things a super hero has is a heroic name. For example, Flash has that name because he is able to run at the speed of sound. Hawk Woman has that name because she has wings like a hawk and she has the attitude of one. And my dad has a heroic name just like them too. Dad and Father. They may be names that most kids call their fathers, but mine I say with pride. For my father is the one and only perfect father that I could ever ask for. And that makes him look like Superman to me. This I believe.

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Gettin' On Up Under My Skin... :-o/

Friday, May 30, 2008

Yesterday (Wednesday), I woke up in the same position that I had gone to sleep in, according to CC. Once I had opened my eyes, I attempted to set myself up, and found that my left shoulder, and bicep and tricep, felt as if I have broken it/them; I could not move my shoulder. I could not move my elbow. I was able to move my fingers, but I was not able to move my wrist around. The pain was excruciating, and though CC had to go to work, she fed me some yogurt before she left, and she helped to try and get me propped up so I could be sitting up in the bed. The process took a little while to be able to pull off.
For the most part, I stayed in bed all day yesterday, only getting up to go to the bathroom. My aunt came over that morning, after being called by CC while CC was on her way to work. My aunt stayed with me all day until CC came home. I can't imagine how I would have made it through the day without her help. As the day progressed, my hips and my thighs began to hurt as much as my shoulder was hurting. I was able to walk with the assistance of Missy or CC, or if I walked with the cane, I had to use the cane holding it in my right hand and walking very, very slowly; one step at a time. It's got to feeling like my body had just betrayed me and my options were minimal.

My regular home care nurse, K.aye, has been out on medical leave herself, so I have had two new nurses for the last two visits, and the nurse that came yesterday was fantastic. Her name is Debbie, and she is very familiar with HKPP, having studied it and worked with patients suffering from it on the East Coast, where she is from. As soon as she came into the room where I was, I explained to her what was going on with my arm and shoulder, and she nodded her head in acknowledgment and understanding of what I was saying. She then shared that this is part of the HKPP process, dealing with the muscle damage dealing with muscle inflammation and just dealing with the pain, for that matter. She shared with us that it is very important that I stay on oxygen, especially in the timeframe of taking the pain pills, because the lower lobes in my lungs have begun to not perform properly due to HKPP and that I'm at increased risk of dealing with advanced cases of bronchitis and pneumonia; typical issues associated with HKPP. Towards the end of the nurse's visit, I asked her if all the different things that she's read in my chart and the things that I have explained to her, add up in her opinion to a diagnosis of HKPP, and she said 1000%.

This morning, Thursday, I woke up in less pain than I did yesterday, but I was unable to lift my left arm and move it around without dealing with a substantial amount of pain. There is no question that the pain medicine helped to give me back some mobility, in that, I was able to work through the pain, because it didn't hurt as much thanks to the pain meds, but at least my hips were a little less painful than they were yesterday and I was able to become a bit more mobile as the day wore on. I was pretty tired today, not having gone to sleep last night until 2 a.m.(I guess what that means is, I went to sleep at 2 a.m. this morning...). I ended up taking a six or seven hour nap yesterday to somewhat make up for the lack of sleep. I slept a little bit today as well kind of dozing off, catnaps and the like.
It is hard for me to believe, and to accept that my body is just falling apart before my eyes and before the eyes of my family and there is very little that I can do to stop it, at this point. Missy has gotten to the point now where she is verbalizing more and more that she curses the disease I have and that it makes her angry and frustrated to see me hurt and to know that I am deprived the many things that only two years ago I had and I could do. One of her most favorite things was me driving them to school in the morning in my truck. At this point in time, I can't imagine driving any real distance at all due to the reality that the attacks hit so quickly and so fast now, that I don't have time to respond, I just react, and all within a matter of a few seconds, I am incapacitated and at the mercy of my company or surroundings.

As a matter of fact, if I didn't have the software that allows me to dictate to the computer, then I wouldn't be able to get these thoughts into the blog at all, because I can't bring my arms up to type with any consistency or price.
Josh has been away on a two day overnight with the school and he comes back tomorrow (Friday) and I have been missing him greatly. I suppose it is on to Friday now, being that it is 12:22 a.m..

Onward...

Pre-Memorial ramblings well into the night...

Sunday, May 26, 2008.

It's about 1:21 a.m. in the morning on Monday morning, memorial day, and I had a long nap this past afternoon, which is kind of messed up my sleeping schedule for tonight. For the most part, today was particularly fun because I was able to go to church, or better said, we as a family went to church this morning to Capital Christian and we all sat together in the pew and enjoyed church altogether as a family; something that is becoming more regular than it has ever been in my life. As for this morning, we all got up in a timely manner and were able to get cleaned up and dressed and ready to go in time for their 11:15 Contemporary Service. CC dropped us off at the front doors so that we could walk in slowly and comfortably and by the time she parked in a handicapped space closest to the church, she was able to catch up to us even before we had reached our normal entrance door into the sanctuary. I had packed a PB and J. sandwich and some carrots and a couple bottles of water for this morning's outing in hopes that that would be able to hold me until lunchtime and head off any metabolic challenges that may arise, which it did. The pastor who preached this morning spoke on dreams and dreaming; this is the ongoing topic for the better part of May, and they have had a variety of teachers teach on the subject. Josh was sleepy and restless, but the rest of us were engaged by the pastor's message.

After church and the slow walk to the van, we loaded in and we headed back towards home. Wisely, CC had brought a tank of oxygen to have in the car for the travel and I was very appreciative of having access to that on the ride home. We came home after lunch out (a VERY rare occasion), and I was able to slowly walk into the house, even more slowly than I had walked previously, and headed for my bed upstairs to take what was supposed to be a 30 minute nap.

Five hours later, I awoke to the smell of CC cooking dinner for the kids downstairs. I took to pondering how it was that I slept for five hours for the next 15 minutes or so and then determined that if I was to continue to ponder, I was likely to go back to sleep for who knows how long, so I got up and went downstairs to see what all had transpired while I had been asleep. Wonderfully and miraculously, CC found several of my medical documents from eight plus years ago, where we still lived in the Bay Area and within those documents were notes from the labs that had been run indicating consistency in a number of elevated labs in question now. We hope that this will prove helpful once they are copied and forwarded on to my primary care physician as well as my current G.I. Dr..

I should note that CC’s main goal for this three day weekend is to go through all the boxes in the garage and restore our garage in to a 1&1/2 car garage available for parking the van within, like it had been when we first moved in here. Needless to say, this endeavor will turn up many, many documents, pictures, toys and all kinds of things that we have been missing since 2003 when we moved up into Fair Oaks and had to put most of our belongings into boxes six months after we arrived, in order to accommodate the living change of CC’s mom coming to live with us from Saratoga. The bottom line, as well as the end result, was that many things that we wanted access to no longer were accessible and soon became lost in a labyrinth of cardboard boxes and gaff tape.

So, that covers today or better said, that covers yesterday, which was Sunday. As for Saturday, CC, and I both worked in the garage. Being that CC wakes up way early, she had done quite a bit of work by the time I had gotten in there in the morning. I started taking care of small projects that I felt I could begin and end with, which was helpful in that I didn't find myself getting frustrated for not being able to finish a big project due to health factors coming into play.

CC is incredible. When she gets a drive to get something done, few things can get in her way and keep her from accomplishing her goal. Unfortunately, I DO happen to be one of those things that can slow her down, but due to our knowledge of how to treat and take care of my symptoms and condition, for the most part, she is able to get me stabilized and then the kids help monitor my status, while life is able to continue on in the house instead of everything coming to a complete stop, because daddy is sick, yet again. At one point around lunch time, I got caught up in taping down the ramp that my father built going from the garage into the house and I wanted to tape it down to the floor and the rugs so that the wheelchair travels more smoothly from one location to the other location. I figured I wouldn't be down very long doing what I was doing and I was hoping that I would not pay a price for it... but I was wrong. CC and Josh were in the garage at the time that I stood up after my final stretch of taping, and very shortly thereafter I was aware that I was sitting in a chair and then from there Missy appeared and she and CC helped to carry me into the living room and onto the couch for what would be about a four hour nap, complete with muscle spasms, liquid K+ and nasty, nasty pain. I get angry with myself for doing things that I know, in retrospect I should not do, but at the time, it seems so easy to do and of little risk. I think that CC gets more angry with me than I get with me, primarily because we go over, and over, and over the topics of what I should and should not do and the things that I have to just let go of and let other people do. But that is hard; much harder than anyone could imagine to do, PLUS it is on a daily basis, not a weekly basis, not a monthly basis. Normally after a person has been leaning down or down on their hands and knees for a period of time working on something, when they stand up or stand up quickly, they get what we would always call "head rush" and then they would have to stand still for a few moments to gain their bearings about their internal system levels out. That used to be me as well, but now I don't walk away from a head rush. I am fortunate if I can remain standing, I am unfortunate, if I cannot. Apparently, I knocked some things over yesterday in my attempts to try to get my balance and be able to hold myself up; I couldn't see, and I couldn't stay standing. Once again, CC caught me (I think) and Josh brought a chair over and I dropped into the chair placed directly behind me. One must keep in mind that I weigh + /- 250 pounds, which is a lot for CC to have to hold as dead weight.

After the lengthy nap, CC and the kids brought in the videos that they had rented the day before, and we chose to watch a video called “August Rush”. Apparently, this movie won several awards, and after watching it, I could see why. I would strongly recommend anyone picking it up and enjoying it when time and opportunity present themselves simultaneously. Essentially, it is about a boy who is growing up in a orphanage, and he dreams of finding his parents, and he believes that he can hear them in the “music”, and that the music will help to lead him to them and bring them together. The music is mostly in his head, though, as the movie moves along and he is given the opportunity to try different instruments, he masters them with the speed of a prodigy. He runs away from the orphanage and gets hooked up with Robin Williams, who portrays a character most believable. Robin’s character is that of a hustler, who uses gifted kids and play instruments in several different locations in New York and the money that they collect they bring back to him and then he gives them a slight portion of the money while the rest goes to him. I won't tell you too much more past that, except that the movie does have a happy ending though it runs a little bit long. It is a good family movie and quite enjoyable.

Following watching the movie, the kids prepared the downstairs couch for them to sleep on and CC and I retreated up the stairs and called it an evening, going to sleep shortly thereafter.

Completely new topic:

Most regrettably, and it breaks my heart to do it, I am going to have to put my truck up for sale on Craig's list. The "Red Hot Chili Pepper" must find a new home and a new owner being that it is costing us monthly to simply keep it here at the house for me to simply and painfully look at and not drive. When God restores my health, and I am once again privileged to drive, I will again look for a truck very similar to the Pepper.

*sigh*

E-mail me or call me if you have any interests in it, or if you know of anyone that would be interested in it.

I expect that the next entry will include more regarding what is coming up medically for me, what is on the horizon and my attempts and communication, requesting prayer cover, prayer support and prayer encouragement for me, my wife, my daughter and my son, as well as my family in the Bay Area and my Aunt and Uncle up here in Sacto Area, as well as my friends who have become family: “My Team” from FOPC and who will always be “My Boys” from MPPC. Not to forget my Chinese Uncle/Mentor; a divine friend and brother. This very brief list does not merely reflect a huge list that is within my heart. If you know me, then, you know you are there.

It is now 2:56 a.m. and I am done typing (or better said, speaking/dictating)

Peace-

More of the life of...me

It is Wednesday May 21, 2008.

This entry is going to be done via software called Dragon Naturally Speaking. It's the standard version and its version 9. A very, very good friend sent it to me to give a try and work with, so it seems most logical to try it out while I am writing the entry. Seriously COOL! (Look out folks, I'm probably gonna get wordy on ya) :-)

Instead of recounting from the last week or so to know I'm in a start with today and then kind of work my way backwards as I can remember them recall what happened, so let's get started...

When I woke up this morning, I wasn't feeling as well as I have the past few days when I have woken up in the morning and I thought that to be kind of strange. I was hoping that I would feel better than that I would be able to get some things accomplished, but that was not to be today. I was able to be up in time to see Missy and Josh off to school; that always makes me feel much better and helps me to begin my day in good spirits. After seeing them off to school. I had some breakfast, which was primarily Georgianna eggs that CC had made a few days back. Georgianna eggs is an egg casserole with some different cheeses and in eggs and some milk, and it is wonderful, though often made with chilies and peppers for those that like the spicy food. I, however, am boring and terribly Caucasian and often simply choose plain and Georgianna eggs, which I think taste wonderful and are a good source of protein in the morning. Surely after breakfast I was feeling tired, so I figured that I would head up into my office and look at some e-mails and see what I could get done by just sitting instead of walking around in doing things. While I was working on some e-mails, I noticed that I began to sweat like crazy and became very, very tired. I headed to bed and lay down for a little while. Kind of napping on and off for a bit and then felt better once I got up and I went back to the computer and finished out the e-mails that I wanted to work on.

CC called from work on her break and we touched bases like we normally do when she is at work. This time, she shared with me that during the night, I had suffered an attack of spasms. I didn't wake up from them. She woke up because of them and she monitored me until they stopped. Once they stopped, I apparently realized that I did not have my CPAP machine on. So I reached up, put the mask on, turned on the machine and went back to sleep; this was all around 3:15 AM this morning. So I guess I know why I feel as yucky as I do (or did). She shared with me that that's not an uncommon occurrence at night. I don't have any log for nighttime attacks after I've gone to sleep, although I have suspected that I was having attacks during the night. There have been a few times that I have woken up paralyzed, unable to move, not able to speak and breathing very shallow. I have also woken up in complete fits of spasms that only let up once I warm up and or I have become completely exhausted. The days that follow those types of attacks during the night are hellish and painful days to get through. Today was kind of one of those days.

My mom came up on Monday and has been here helping out with most of the issues that I deal with; helping me to get snacks, fruit, groceries and, from time to time, helping me get dressed and driving me from one location to another location. Most often, my aunt Judy comes over and helps with all of these things that in the times that she is busy and unavailable. My mom looks to see if she can come up and help in her place. Their help and intervention in my needs, makes it so that CC can focus on the kids and their needs directly, and be less overwhelmed.

Around midday today, my mom left to go and get a couple errands done that we had talked about getting accomplished, and it was during her errand to run that another attack began while I was down in the kitchen cutting up some apple slices for a snack; my legs began to vibrate and my shoulders and my hands began to spasm as well and my eyes were having a very difficult time being able to stay focused on the apple and the knife while I was trying to cut it into small pieces. Fortunately I didn't cut myself. However, I did stop what I was doing, took the food that I had prepared and very slowly made it up the stairs and into my bedroom. Once there, I saw my cell phone, grabbed it, and pushed the one button that dials my mom's phone number and let her know what was going on. She finished out where she was and came straight back and helped get me situated on my bed, and brought me the different medicine to help shut it down. Roughly 3 hours later, I wake up and CC is making dinner. Life has moved along, and all the while, my mom has come in and checked on me every so often to see how I was doing and to make sure I was still asleep.

The attack today, and the attack last night are undoubtedly due to drops in my potassium levels. This afternoon's attack, reminded me of several of the attacks that I had had at FOPC when I was working there alone in my office. Those attacks, like this one, spooked me. Unfortunately, we need to add up the attack from last night, the attack from today, the attack yesterday evening, the attack last Sunday, the attack last Saturday, the few attacks that happened during that preceding week and the attack that I noted in the blog entry before this one, in which I was coming out of the movie theater when things started going south for me. All of these attacks, pretty much all of these attacks, are rooted in my potassium levels, and the drop in my potassium levels, and possibly there could be some relationship with my liver and all of this as well, but I'm putting my money on the potassium. Last Friday's attack as well as the following Saturday and Sunday attacks were a combination of paralysis as well as muscle spasms and in each of those attacks I was unable to speak and unable to open my mouth due to my jaw being locked shut and the muscles being clamped down so that I couldn't open it. I learned a new definition of scared; when you can think what you want to say, but your body will refuse to allow you to say it to the very one you love the very most. It scared me bad. They all did.

We do have a doctor who was helping us with my liver and trying to figure out why my liver enzyme numbers are all whacked out and high. People that have high liver numbers tend to have a definite problem with their liver, and I have had high liver numbers since the middle of the 1990s, when we found out just before my back surgery, that there was an issue with me having high liver counts. The doctors at that time, and since that time, have simply given it the generic term “You have a fatty liver" which means that they don't know what's wrong with the liver and they're not going to do any more investigation into it to figure it out, other than some simple labs. Well, at this point in my life, simple labs simply will not do. We must know what the heck is going on inside my body so that we can take steps to correct it. The next planned steps that we hope to pursue, include having a liver biopsy done in the next few weeks, which should provide conclusive evidence for the doctors to research, to find and clarify what the issues are with the liver. They told me that during the biopsy I won't be completely out, however, I won't care due to the medicines don't give me in advance. Let's all pray for really good medicines, okay?

***I'm going to stop at this point and just let you know that because I am using the new software and because I am somewhat tired at this point, there may be word mistakes or punctuation mistakes. And I may not catch them, so bear with me and do your best to figure out what you think I'm actually trying to say, because that's what I'm going to do… :-).

A good friend from my past sent me an e-mail just a couple days ago, his name is Hollis Tollefson (SP?)… I never had a problem spilling his first name :-) (forgive me, Hollis) anyway, Hollis and I used to work at Menlo Park Pres during MPPC’s most significant worship years, in my opinion, the years where money wasn't a problem, people thought out of the box, and I felt that we had one of the very best worship leader/worship teams that was leading worship during the time of 1998 through 2003. Our director was second to none, and the staff that he hired were all exceptional in what they were expected to do. I count myself blessed to have been a part of that time frame, to have been part of that family, to have had such an incredible opportunity to learn worship presentation/worship participation/worship leadership/organ and choir integration with full band arrangements with the recognized “best in the area” players every week.

Well, I digress. What I was starting out to say was, that Hollis and I were part of the same staff at MPPC. Hollis was brought on to work as an associate with Bob March in our IT department, while I was the Chief Audio Director the Media Technologies Department. Hollis wrote to me that he was able to track me down via Google, and from there, sent me an e-mail. Hollis, if you're reading this, please know that I hope to get back to you within a couple of days or so.

Also, Carl, if you read this, please know that I love and miss you guys and I'm sorry, I have not been in better touch. Hopefully, reading the above will help you to know what's been gone on over the past few weeks, and know that my lack of communication is not intended to hurt or frustrate. I hope that makes sense. Some days, I simply just don't want to communicate. I just want the pain, the exhaustion to fear in the symptoms to just go away and talking on the phone during those times is hard for me. I guess that's my excuse. I hope you understand.

Those of you who read this, who live in the area, please know that it would be wonderful to see you if your schedule allows. Please give CC a call on her cell phone or on our house phone so that we can arrange a date and time to hook up.

Until then-

Peace.

Today's Glimps...

Tuesday, May 13, 2008

Last Friday afternoon, after picking up Missy and Josh from school, we took them to see “Horton Hears a Who” as a surprise and kind of “Welcome to the Weekend” gesture. I brought some sliced turkey rolled with Lace Swiss cheese (pretty low sodium content) but still succumbed to the temptation of a large pretzel with no salt on it (later finding out it was 350mg of sodium in the pretzel itself).

After the movie, I found it profoundly harder to stand and become mobile to exit the theater, being the last one out to boot.

CC went ahead to bring the van close to where we were going to reach the sidewalk and as I walked with my cane, I found it necessary to use the hand railing on the right side of me as well. Upon reaching the van, I loaded myself in and we began our ride home. My legs began to ache more and more finally reaching the point where I couldn’t move them voluntarily and I began to focus hard on not succumbing to the pain and positional discomfort. CC realized I was in mid-battle and instructed my daughter how to get water and my pills into me to begin the “counter-measures” so to speak. At this point I couldn’t open my eyes and see or use my hands and arms.

When we got home, CC rolled out our wheel chair and she somehow maneuvered me into it with Missy’s help and then rolled me into the house and onto the couch where I stayed for a few hours. When it got to where I could see again, she and the kids helped me up the flight of stairs to our bedroom and got me into bed.

It had been a number of months since I had an attack of paralysis; most of my recent attacks of late have been low K+ and high Phosphorus which present themselves in uncontrollable spasms, severe brain fog/disorientation and inability to control communication and complete exhaustion, often leaving me with vicious muscular pain for a few days following, the kind of pain that is not touched by non-IV medicine, unfortunately.

Yesterday, Monday, I was down stairs in the morning when the intense sweating began and my ability to think clearly diminished. I ate some steak to boost my protein and called my aunt who lives near-bye to come and help. Made my way up the stairs and got onto bed and waited for her. The rest is a blur.

Today has been better, so far…at least I’m typing…

Up Periscope...

Tuesday, April 29, 2008

It’s hard to figure out where to begin tonight…I guess I need to begin with just apologizing for not having updated this for so long. Each day brings it’s own “excuses” for not simply sitting down and typing out what’s in my mind, but the bottom line is that I haven’t and didn’t.

Missy is in Oregon till tomorrow on a school field trip. That is incredibly hard for me to have her that far away. I’m very uncomfortable with it, but I know it is just the beginning of her stepping out and learning knew things about where she’s gone to and about herself. It’s just that she’s daddy’s girl and he’s having a hard time with her absence.

On the health front:
Where to start that doesn’t already look like familiar ground?
Wanna guess what’s currently the list of diagnosis’s:

- HKPP

- Hyperaldosteronism

- Hyperphosphatemia

- Hypoglycemia

- Sleep Apnea (considered severe including 00:97 second gaps between measured breaths in their Sleep Lab)

- Hepatitis B (?)

- Chronic Back pain

- Diabetes Type II

- Progressive Myopathy (front and back arms {biceps and triceps, etc} and legs, quads and thighs

- Myoclonic Jerks

Last week CC and I went to Kaiser’s South location Pain Clinic and most of the way through I suffered another spasm attack in front of the doc and her staff and we were coded (coded means that while you are in a hospital facility and you begin suffering, the person in charge calls for an ambulance and EMTs). I’ve had this happen to me half a dozen times or more now and each time it happens, the doctor in charge sees their view of “the elephant” and thinks they know what I’m dealing with, as long as it is not HKPP, it would seem.

Because of the negative experiences and treatment we have had in the various ER’s, CC tries her best to keep us out of them, but sometimes they are out of her control and we have to go as a result of other circumstances

Bottom line is that I seem to get hit by one kind of attack or another at most every three days, of not daily, and these attacks nearly always don’t end up in the ER but happen in a restaurant, a car while traveling, in a meeting, during church service, in a doc office, while having the labs drawn, or even after eating a meal turning out to be high in salt or high in sugar. CC and Missy will carry me out (as inconspicuously as possible as to not panic the natives or said establishment) to the van’s front seat (if the kids are with us) and we head straight home to the couch or bed followed by more medicine to prevent the attack’s progressive nature. If left alone with no meds, I likely pass out from the pain and/or the physical exhaustion. The medicine intercedes where my body cannot.

I cannot walk medium to long distances anymore; I am almost always in a wheel chair that we have here at home. I walk with a cane now every day due to regular weakness in my right leg/side. I’m going to have to accept the probability of figuring out how to pursue one of those 3 wheel scooters so I can gain some mobility back. We’ll see.

We have a home care nurse who comes once a week to take labs and get a general assessment of how I’m doing and help us progress beyond the Kaiser wall. She’s a wonderful lady who knows her stuff and more than anything wants to see me well again. She is and has been a blessing.

My mom has been up here now nearly a week helping me get along and being invaluable in her care of me and us. I think she’s heading home tomorrow where she will simply pick up running from where she left last week.

Speaking of invaluable

My Aunt Judy has shown incredible attention and has gone far, far beyond the normal boards to met my and my family’s needs during these past 2 years in particular. My Uncle Norm has done the same while also volunteering weekly at a variety of places where he has become well needed and appreciated. I cannot imagine adequately showing them how much I appreciate their love for me and my family. When I end up in an ER, 9 of 10 times my Aunt (and sometimes my Uncle too) is there when I arrive or very shortly thereafter to help CC any way she can.

On the “So what do they think now?” front:

Barely more than they did before, with the exception that a GI doc is trying to prove or disprove me suffering from Hepatitis B…that’s a new one. A few more labs and he plans to make his educated opinion known. There is a possibility that he would do a liver biopsy, which I am in great favor of because then they can actually work with the liver itself instead of lab tests which is little more than a bloody True or False game with my blood. Average lab draw is between 8 and 14 tubes per visit. Average number of needle pokes to locate veins is 2 to 3 and as high as 4. I’m what the labs call “ a tough stick”; my skin is thick which frustrates a simple needle intrusion and the veins in both my arms are scarred and blown, meaning they cannot yield a fruitful draw and then they have to stick in the back of my hand or at the knuckle of my index fingers where a vein crosses over from the finger to the wrist.

I don’t look forward to the lab draw with the one exception of a lab tech named Dwayne who has never failed me (1 stick typical, 2 sticks rare. I consider him a friend even though I don’t know his last name. He’s got tattoos all over; arms, neck (front and back) and looks like he’s been there and back and we hit it off the first time I met him. He remembered my name the next time I saw him, probably a month later, even before getting the lab paperwork.

I wish I could stop all my meds and just clean out my system, but the fear of that following unknown is more than I can deal with, not the least of which would be the crap I would get from the nurses on the hospital floor who would be taking care of me as a result.

Each time I have a spasm attack or a paralysis attack (those have been more at night than in the day time), the muscles affected by the attack are permanently damaged by the potassium. This is called “myopathy” which I tested positive for back in 2006. Life right now is surreal to me. I’m feeling like I’m waiting for God to catch me up in His huge hand and tell me that the test is over and though I probably got a barely passing grade, that I’ve passed this part of my life and my family’s life and He will heal me back to independence and breadwinning with a renewed vigor for spreading His news through the skills He’s given me.

…Just not yet. Just not yet.

Indebted…

There are so many of you that I have not followed up on replying to emails and voice mails; Jared, David, Steve, Chris, Rob, Aunts and Uncles and cousins back East, My bro Harry, my brother and Encourager Art, my example Karl, my blood Kev, my true, true friend Neil- my brother for life as well as other brothers mentioned…the list goes on and the weight of the mere letters causes me to sink lower in my chair.

Please forgive, those mention and those not.

Bob and Carolynn…we remain speechless with undeserving hearts, broken in gratitude…

==========================================

Certainly there is much, much more for me to pour out from thought but not tonight.

A question though, before signing off: who knows of a software that would allow me to speak into a computer mic and have those spoken words converted into text in a Word Doc or text file or so? This ability would prove very helpful given my situation. If any of you can point me in the right direction, that would be a blessing.

And now, for this evening’s understatement: I miss you; hearing from you, seeing you, texting with you, even visiting with you. When you can, email me when you’ve a minute or two.

Well, I’ve thought, phrased, rephrased, corrected and typed now for two hours.

fíne

Sorry...Friday, April 11, 2008

Friday, April 11, 2008

Life is still challenging I know I'm better off than so many people who are suffering from the varieties of impairments from car accidents, drive-bys and all of the varieties of cancers, but as I ride out my daily pity parties, that perspective is difficult to maintain.

Attacks are every other day, between minor to major, but I have not been to the ER in the past 2 weeks, which is a good thing, regardless of my mood.

For those friends who live near by, it would be cool to see you if your schedule will permit. Most of my days are spent recovering, lying down or being seated.

CC needs your prayers for strength and endurance being that everything is up to her.

More later.
w